Walking, Driving and going to work...

Kyra is a busy, busy girl. She loves to go outside and watch Kaden & Mikahla play basketball. She enjoys taking walks to talk with the birds or watch the neighbors' horse graze. She has become a little bossy too. The other day we were watching the horse, as he headed toward the barn, Kyra shouts in a somewhat demanding tone "Stop, horse, come back here!" I believe she understands that she controls our world so why not everything else?!

Kyra has a car now. What a great way to distract Kyra from her therapy sessions. Little does she know that this activity helps build up her muscles and will provide her the skills for walking. She is able to push the car up and down the driveway now. She moves very slowly but she is determined. Too cute... she gets into the car and says "I'm coming" over and over about 12 times before she makes it to you. I applaud her determination and focus.

We also found a pediatric handicap walker at a local goodwill store. What a find. It is in excellent condition. When I brought it into the house Kyra was all over me. "Wow Mommy Wow" she exclaimed several times as I scubbed it down. It is shiny and she was very curious to see what I had - that is until I stood her up to it. Not as much enthusiasm. We keep after her with this, she does not cry as much as she did that first day. But not 100% sold on the exercise either. The walker allows us to let go of her hands and gives her the control. It has been a great way for her to build the confidence she needs. I truly believe our biggest battle is the fear of falling. I hope we can overcome this soon - she is getting heavy.

Ok so if I haven't said it before, Kyra is remarkable. I am in awe of what she is able to understand. Two nights ago, Kyra emptied out the toys of her "purse" ( a clear bag with a long handle.) I watched as she struggled to pull it up to her shoulder. Once in place, she scooted across the floor heading toward the hallway and yelled "Bye Mom" I asked her where she was going and she sweetly replied "work" rounded the corner and stopped at the wall that still displays her "artwork." She put down her purse and carried out a display of coloring on the wall. Moments later, she picked up the purse, pulled it to her shoulder and proceeded to come back into the room "Hi Mom." Now how amazing is that. Kyra has no concept of where we go each day. Her knowledge of the world consists of our home, our neighborhood and the Cleveland Clinic. But apparently the girl pays attention to more things than I know. I always tell the nurse each day where I am heading, to work or to the store. At those moments Kyra is usually playing or browsing thru her books and only seems to interrupt her activity to say "bye, bye" and blow me kisses. Who knew she was paying attention the whole time.

Other moments that have taken place over the last few months.... Kyra's vocabulary is expanding. She is putting sentences together. I heard her call for her "sis-sis" last night. When Mikahla came running down the hall Kyra asked her "want to play with me?" They have a hand-jive song called "double-double" they enjoy singing together.... At Kyra's last Cleveland Clinic visit Kyra said her doctor's names. Ok, Radhakrishnan is hard - she calls him "Krishnan" but she says Marita (Dr. Marita D'Netto) as clear as can be.... Kyra is also working on her nursing/doctoring skills too... she has a Doctors Kit and checks the temperature, heart rate and blood pressure of her teddy bear 3-4 times a day. She always reports he is "35" degrees and doing "good." Check out this photo, she wanted a cap and mask too.

Happy Birthday Kyra - Wow 2 Years Old!

Well it is official Kyra is 2! This past week she crawled twice on her own, quickly recovering into a sit once she realized we were watching her. I guess she wants to keep this a big secret. Kyra also pulled herself up to her feet at the ballet bar yesterday. AND the true test that she is 2 - Kyra drew a masterpiece on the wall - so proud saying "Did this - BLUE"


It hardly seems possible that it has been two years already. This tough little girl has blossomed in so many ways. She has become "Miss Manners" using her "pease" and "t-ank you" All day today she was saying "t-ank" you to everyone for all her gifts. And early this morning she tossed Nurse Becky a toy and told Becky "welcome." Kyra got a surpise this morning with a BIG, BIG birthday cake from Becky's husband, Jason. He made this amazing Mickey Mouse Club House 3-D Cake. Thank you Jason and Becky. We managed to get some icing on her lips and she announced "Mickey!" She loves her Mickey Mouse.

This week has been a bit emotional for me. My heart has been filled with happiness and excitement reaching this milestone. Early this week I had an opportunity to visit with Dr. Marita D'Netto and speak with a few nurses from the NICU. I have also become more aware of the friendships (actually family relationships) created with our home health nurses, Becky, Barb, Kris and Diane. All of these individuals have forever changed our lives. So today marks a birthday for Kyra but it also marks a "win" for all those who have been a part of her progress. I can only hope that each one of you understand that they are so much apart of our family smiles, not just today but everyday. Everything you have done, everything you have given, and everything your dedicate yourself to MATTERS!

Our friends and family have been remarkable and a great source of strength. Someone once asked me "How do you do it?" My answer was "anyone can do this just as long as they have OUR family and OUR friends behind them." We have an amazing support system.

Today I recieved a beautiful bouquet of flowers from my sister with a card that read: "Miracles happen for those who have the strength to believe." So true, Thanks Cher!

Check out these Miracle Moments:

Calling "Tweet-Tweets"



Excited to see Mikahla & Kaden roll the ball to her





Birthday Girl blowing out her candles
She DID IT!!!

Happy Easter - check out my bunny face

Sorry for the delay in updating the blog. Kyra is doing great. It has just been very busy in our house lately. Mikahla has been involved with basketball, Kaden with Boy Scouts, and Kyra is busy pulling out all her toys, leaving them thru the house. Yeah a regular family!!!!

Kyra is still going to The Cleveland Clinic every two weeks for IVIG and checkups. She is remarkable. Her replacement fluids now run at 80cc/hr for nine hours and her IV supply company has divided the fluids into two bags to allow Kyra to wear her backpack during the day. This helps free her up and allows her to explore. She is now rocking back and forth with one knee in a crawl position but still apprehensive and will not get up on the other knee. She is recieving physical therapy one day per week. The therapist is surprised at how quickly she is responding and improving. We also put up a ballet bar and mirror to encourage her to pull herself up. Although it takes ALOT of encouragement she will stand for a good 8 minutes and is no longer locking her knees.

Kyra's vocabulary is ever expanding. She repeats nearly everything she hears. Kory and I put on music for her entertainment when we change her broviac dressing. She enjoys the Jersey Boys and now sings along (with actually words matching) to "Sherry Baby" and "Big Girls Don't Cry." Afterwards she dances to the rest of the CD. So fun to watch. She is definetly a Conrad - LOVES, LOVES her music!

Kyra enjoys ALL her toys!

Hanging out with Sis-Sis

HAPPY EASTER - LOOK AT MY BUNNY FACE

Since my last post, Kyra was hospitalized again. This time for six LONG days due to a gram-negative bacteria. Trying to keep her entertained in the hospital was a job in itself. If I didn't already appreciate our home nursing now I definetly know just how much I could not make it without them. Whew! I quickly realized that Kyra has been constantly engaged with activity and entertainment from at least one person. I guess we were trying to make up for lost time during her stay in the NICU. Now, I make sure she spends a little time playing by herself. I have actually warned Mikahla "no I am watching her and she does not need anyone to play with now." Mikahla doesn't get it yet, but she is approaching pre-teen years and will appreciate my strategy later. As for Kyra's bug, no need to replace the line. She recovered and we put good use of our time in the hospital. Kyra began taking water out of a bottle - now we are transitioning to a cup. She is actually asking for a bottle now. She is also eating a bit more. We are seeing her throw a fit if we do not get the cup or food in fast enough - ahh a typical toddler emerges.

I have realized I have not added photos of Kyra in a while. She is growing so fast and learning so many new things. She is our little greeter. Anytime we walk in the room, we hear this sweet little girl say "hi." and if not acknowledged quickly enough you hear a very loud and stern "HI!" She makes her presence known. Here are some big girl photos.


SOOO BIG!


FEEDING HER BABY


BABY HAS A G-TUBE TOO. THANKS NURSE BECKY!

"IT IS A WONDERFUL LIFE"

I have watched the movie "It is a wonderful life" so many times. I hold back tears and smile everytime I hear the bell ring.

It has been one year ago when we spent our holidays huddled around Kyra in prayer as she struggled to get thru two neurosurgeries back to back. I held onto hope but honestly I did not know if she was going to make it thru those days. To look at her today, you could never imagine the path traveled. She is a bright child, an amazingly forgiving child and a loving child. Her smile captures you and reminds you how simple it is to achieve happiness in this "wonderful life."

This is not an easy journey by any means, but what meaningful journey is? There are challenges and mountains but they are matched with wonderful rewards. I have been given a true gift this Christmas. This gift - you cannot wrap, contain it in a box, no need to put a ribbon on it - it is simply the most beautiful blessing - to be home with my family, in our home, filling the house with love and laughter. It is the magic of Christmas that reminds us how truly valuable family and friends are in our lives. So as we set by our tree I will smile all the more for I know there are many, many bells ringing for all the angles in our lives... This journey has never been traveled alone. Our family and friends are our Angles, you have been tremendously supportive and we are grateful. It is your thoughts, care and prayers for our family that help provide us these blessings. Today I wish you all the same blessings of close family, good friends and joy this holiday season and all thru the New Year. And may I just say I marvel in how you so brilliantly hide your wings.

Merry Christmas!!!

We love our OWN bed!

Kyra has been hospitalized twice since our last post. The first time was due to a high temp, which lead us to the emergency room with a blood draw and a dreaded possible line infection. After three days in the hospital it was determined that the positive blood draw was a circumstance of cross contamination. The fever was due to an ear infection, which was easily treated during her stay. THANK GOODNESS! We are fortunate that Kyra has been able to avoid hospitalization this long (thanks to great nursing care at home!) Her absent immune system makes life difficult, especially with school age children and a teacher in the house. I can tell you I have a heightened awareness, I am quick to exit an area if I hear a sneeze or cough. I can sympathize with someone from a distance!

A week ago we spent time in the hospital because Kyra's broviac line had a tear. Her line was able to be repaired without surgery. Kyra's broviac was cut in two pieces (which made mom very nervous) the bad was disgarded and a new piece was threaded into her existing line and glued together. We had to wait 48hrs for the adhesive to dry and hope that she had an open line when we were able to access it again. Who knew you could glue together a broviac line?! I was skeptical to say the least - I was thinking "it's rubber, like trying to glue two rubber bands together." So we waited and prayed... please no infection

When you have a child with a compromised health condition, your life changes in more ways than you can imagine. Not only are you aware of the coughs around you... you learn more about how fragile life can be and how one thing can turn your world upside down in a single moment. Kyra's broviac line is truly a life line in every since of the word. The fact that she had a tear in the line with no immune system is dangerous. Kyra requires 20 hours of fluid a day thru her broviac to keep her nurished and hydrated - not to mention the medications running thru this line. If nurishment and hydration were not enough to age mom and dad then we add the fact that bacteria could have gained access due the tear in the line. But that is not enough... if the line is not open, Kyra would need a new line = surgery. Kyra will require long term IV support and we need to preserve her access points, surgery should be avoided at all costs.

Happily we can report, Kyra's line was open and we went home. We went home, feeling at least five years older, sooo tired and ready for our own bed. Kyra was just as happy to be home as she spread all out in her bed, rubbing the sheets!

Since our last posting, Kyra's replacement fluid was turned down to 90 cc/hr and we started bolus feeds. Entral bolus feeds are still given thru the g-tube but differs from a continous feed. A bolus feed involves using a syringe to give a quantity of food into the feeding tube at regular intervals. In th past this method was not successful. We would get maybe 20 cc in and clamp her g-tube only to have her bring it up within the hour. Now I am happy to announce Kyra tolerates 60cc in a two hour time frame. This is wonderful for Kyra - we are able to disconnect her from one line and provide Kyra with more time for mobility. Kyra has become very aware of her tubes and their limits. When she comes off of them even for a few hours ... she is all over the room exploring and playing with her siblings. We are even trying to get her used to wearing her backpack. She tolerates this some days - others she is annoyed by the bag.

The last couple days Kyra has decided she is going to eat again. She had regressed, fighting us for every bite. However, Nurse Becky, has found that she can get her to eat by bargaining toys with Kyra - no bites, no toys. It is working. Today Kyra enjoyed a small taste of a sucker - a halloween treat! She said "yum-yum" as she licked the sucker..... Speaking of Halloween - check out our lil' pumpkin!